Did You See Something (Weird)....

I am guilty of not being Malay-centric.

I prefer to be Muslim-centric (even though I have a long way to go to be referred to as a good, let alone devout, Muslim).

You see, I feel that if one is not fixated with one's race, it will leave us with very little racial friction within the society; and since all true religion preaches to 'love thy neigbours as thy would thyself', regardless of those neighbours' religious beliefs, then the whole world would be a much better place. (And contrary to what most western media say, we Muslim are not hell bent on destroying the world!).

Coming back to the racial issue - in the wake of this current trend of 'baby throwing' in the country (whereby babies, alive and dead, were left abandoned in dire places like the rubbish dumpster and by the lake etc - due to unwanted pregnancies), it shamed me to admit that a huge percentage of those cases was of the courtesy of the Malay race.

While a Malay would not even think twice of doing such a dreadful deed, a (true) Muslim (or Christian, Buddhist and Hindu, for that matter) would quake to his/her very core before even thinking of it - in the simple fear of God. And most of those babies are such beautiful, perfect little beings. How can a mother, have carried the creature in her womb for the 9 months, have the heart to do such a thing?

You can blame it on TV or other media's influence but it all boiled down to good sex and moral education (which I am sorry to add - that Malays still find it taboo to discuss with their children) & as children are now more exposed to their surroundings, these sex education must be taught at a very much earlier age (by their parents themselves - whether we feel comfortable about it, or not) and not leave it to the teachers or education system. Elst your children would seek the information from Ms Jolie and Mr Pitt.

How does Adam's case relate to this racial issue, you might ask?

Well, by then, the cat was out of the bag - Eina's baby was unwell and looked 'different'.

While most family members and close friends were loving and supportive, there were one or two who let their tongues get the better of them. They too mean well, but the 'strong' Malay beliefs just govern their thinking pattern. For instance, one very popular line of questioning began like this - 'Did you happen to see anything (weird) during your pregnancy?'

Okay, let me be truthful. I was in Bali during my 6 month term. And as we all know Bali is famous for its temple statues, and those statues do have bulging eyes. So, could that be the reason Adam was born that way? But then again, I was in Bali too when I was pregnant with my firstborn. So, how come Amirul was not affected?

I am a firm a believer of God's will; with science as the testament of that will. For instance, the Islamic Prayers like everything else in this world, can be explained scientifically (ref : Article 1 - Psychological Wisdom of Prayers in Islam & Article 2 - The 'Yoga' in Islamic Prayer) - if only one choose to seek the answer. In other words, we do not just pray 5 times a day beacause a prophet told us to, you know.

So, whatever colloqial beliefs my race might have, as an individual, I believe Adam is the way he is because God chose for him to be. And science explained it as a mutation in his genetic make up.

(Even as I am writing this, the Malay in me somehow questioned whether it is wise of me to put this down in writing, elst be thought of as - ketulahan bah itu / padan muka, tak percaya lagi / there you go, you Malay non believer, see what happens when you doubt - but, ladies and gentlemen, I'll take refuge in God and take my chances, nauzubillah.)

And is it not 'syirik' to believe that one's condition is due to something else (like 'seeing' something during one's pregnancy) other than the will of God? Although I have to admit, that I am guilty of not reading enough of the Quran during my term - so, I'd prefer to accept that explanantion, then, thank you (smile).

Crouzon Syndrome is believed to be caused by a mutation of the FGFR2 (fibroblast growth factor receptor 2) gene (whatever that means :0 ) and Adam happens to be one of the lucky ones in every 25,000 people of the world. It is funny when most of us strive to be different in order to make an impact in the world, when God really chose you to be different, you pray for normalcy (well, in this case, Adam's mommy at least (smile)).

Because, let us face it, society can be cruel. While his family may love him to bits and accept him as he is, the general public may not help but to be curious or even repelled by his condition.

A more mature society like those in Europe and the United States (who has numerous support group for those with Craniofacial ailments like the US' Children Craniofacial Association and FACES:National Craniofacial Association), may not not even bat an eyelid at a craniofacial sufferer; but a less matured one like in Malaysia, definitely will.

So, how do we council him if he is faced with those situation one day? Hmmm, I really do not have an answer to that yet. I guess, we will just have cross that bridge when we come to it, I suppose....

p/s I am truly sorry if I offend any staunch Malays out there, and please don't stake me in the heart with an ancient keris. I am proud to be a Malay. It's just that I believe that some Malay beliefs remain as such - mere beliefs.....I have always been a rash brat, and for that I am truly sorry.

~ No animals or Bali statues were hurt during the writing of this blog ~

Morning Has Broken

I love that song....'Morning Has Broken'. While the lyrics was actually penned by a poet named Eleanor Farjeon and the melody is a reminiscent of an ancient Gaelic hymn, the song made popular by Cat Stevens aka Yusuf Islam, is actually about the celebration of God and life in general. The lyrics also mentioned about the breaking of a new dawn - which was exactly how I felt when at last, my husband and I got to meet up with DSH's Neurosurgeon.

We were finally briefed on what Crouzon Syndrome is, how to treat it and in Malaysia, where. Our fear of not having enough finances to bring Adam to Australia or the US for treatment was appeased, somewhat.

Thank God, there were specialist in our very own National University Malaysia Hospital (aka Hospital Universiti Kebangsaan Malaysia - HUKM) and the Kuala Lumpur Hospital (aka General Hospital - alas not the Rick Springfield version). You see, Malaysia Boleh!

That Monday was also the first time I actually cried after Adam's birth. Not thinking of whether God has dealt us a bad card or anything, but rather finaly knowing and undesrtanding what little Adam will have to go through in his quest to lead a normal life.

Crouzon Syndrome 'sufferers' (for the lack of a better word) differ from one another. In fact, craniosynotosis itself has different branches of diagnosis - namely Apert, Pfeiffer and Meunke Syndromes to name a few.

Luckily for us, Adam's predicament is affecting his neck upwards (as from what we can see for now) - ie he has small ENT passageways, very very very (and I mean very) shallow eye orbits and of course a fused skull. But after a general check up, his lungs and other internal organs seemed to be as they should. In fact, his brain was also the normal size for a baby his age and his whole head is quite rounded as per normal babies. And unlike those with Apert Syndrome, his fingers and toes were perfectly well formed. For this, we really thank the Lord.

(Pix - Illustration of a craniosynotosis recontruction)

But like those with craniosynotosis, Adam will have to go through series of surgical help from as young as 3 months old to as old as perhaps 15 years old and even in his twenties. In fact, Adam's eye socket condition is considered quite severe. (I still cannot forget my Gynecologist's expression upon seeing Adam's eyes, when she received him at the birth bed).

But somehow, finally knowing what the ailment was and what to do next definitely lifted the heavy burden off our shoulders. Oh, the burden is still there, but it just felt lighter, somehow.

That was also when dear hubby decided that all the names we were toying with for him (like Airil aka Gaelic for The Nobleman, Arslan aka Turkish for The Lion/since Tiger in Arabic does not begin with A and Arif aka Arabic for The Knowlegeable) do not hold up to our little one.

Instead, we finally decided on Muhammad Adam Faiq - which literally means 'a Sign of Excellence' or 'a Sign from the Excellent (ie The Lord himself)'.

We may not know exactly what God is trying show us as Adam's parents, brothers and sister. Perhaps giving us Adam is just His way of showing his Greatness or for us to further acknowledge Him and buck up and worship him more, or maybe perhaps to simply leave Adam in our care as there would be no other better family for a special baby like Adam than us.

Perhaps (as proven later) it is also a sign (and knowledge) from God to his doctors who has and will treat him, for the Malaysian Medical profession, for his Indonesian nannies who cares for him in my absence and even for mankind in general.....

(Pix - Adam's Indonesian Nanies - Eli & Yati)

Should You Have To Take Him Away From Us....

I have just recently updated my siblings of my blog on Adam, and asked them if the entries were too sappy.

My brother actually commented that it was not sappy. In fact, he suggested for me to inject more feeling into it.

More feeling, hmmm...like I mentioned earlier, now that Adam seemed to be more comfortable, I too feel relaxed and happy with our current situation. As we speak, Adam was still warded, awaiting for his eye ulcer to subside (again, will write about it later), but in general, he seemed to act more like a normal baby - who cried when he is hungry or wet, and even cooed when we talk and play with him. He appeared not to be in pain like he was in the past.

Hence, perhaps, the feelings of apprehension and worry were not there anymore, while feeling of happiness was not quite apparent (or not shown - for there is a popular Malay belief that if you are too happy in one occassion, you may be crying in the next. Morbid, huh : )

However, I'll try to relieve those early days of Adam's life and perhaps share one thought or two of my frame of mind at the time.

Hmm...dunno if I should share this one, but here goes.

I only managed to see Adam when he was put on my belly immediately after birth, and I did notice his eyes then. The doctor and nurses then quickly took him away and shielded my view of him as they cleaned him up. I knew he was different then, but did not feel any shock (should I have? or did I have an overdose of oxigen to not feel anything at the time). Non the less, I did not go into a shock or anything, and still have not till this day (thank God).

But that weekend, when my husband and I were still in the dark of our predicament, myriad of questions, emotions and worry came to our minds.

What is this ailment? Will he be mentally sound? How do we treat it? Is it fatal? Will he be 'normal'? Will we as a family lead our lives as we previously have? Or will we undergo a drastic change with this ailment? A change for the worse?

Finance was the least of my worry at the time, because I always leave that part to my husband, but when one of the doctors mentioned treatments in Australia and the US, I too began to worry.

To the extend that (forgive me for being human) I actually posed this request to God - 'Dear God, should you have to take him away from us, please do so before I start falling in love with him'.

But the damage was already done. How could you not love someone you have been carrying with you for the last 9 months?

And when I saw him for the second time, at the ICU, he was wrapped up in a pink blanket (much to the changrin of his sister when she saw later that day - 'He's a boy. He should be in blue!' : ). You tell me, what could be more adorable than a baby in pink blanket!

But the moral of the story is - God will answer those who prays (and you must). What may seem like a lost cause today, may actually turn to be a treasure tomorrow. Elst, you die hoping : )

But seriously, as Yoda would say - 'Give up you must not, as giving up is not in the vocabulary of those who believe'...... (sorry, quote was totally made up by moi).

Till next time, may the force be with you.......

No Room for Sadness

Now that Adam is already 2 months old and settling nicely (will write about it later), it is a little difficult to recount the dark days of his first month of existence.

Adam was born on a Friday afternoon with his eye procedure carried that same night. The day after, the Paeds Doctor came to see us to share Adam's prognosis as Crouzon Syndrome, a rare ailment that caused a early fusion of the skull.

But the NeuroSurgeon who was supposed to explain the ailment to us further was away for the weekend. Hence, with only the Internet as our source of information, we learned about the ailment as best that we can. And with the Internet being an inanimate source, the information that we found somehow came accross as a scary thing and doomed situation for us.

Somehow or rather, the DSH Ophthalmologist became my first source of comfort that weekend. Apparently at DSH, Ophthalmologists also sometimes doubled as Counselors (kidding :). While speaking on the topic of Adam's eye condition, we also touched on the subject of Crouzon and other related issues.

I actually mentioned that receiving Adam into the world was supposed to be a happy occassion and trailed off with a big 'But...' hanging in the air.

Dr Radji admonished me and said that it was a happy occassion! With Adam showing his early signs of being a fighter, she also reminded me that technology can now do wonders. With the subtle helping hands of God, Adam has nothing to look forward to but positive things. She also mentioned that we were often dealt with random wild cards and that we should accept what was given with open hearts and minds.

Feeling a little guilty of the negativity that I felt about the situation at the time, I embraced Dr Radji's words of wisdom and decided there and then, that I would move headlong with the situation and take whichever road that God has put in front of me, with the best ability and resources that He has bestowed upon me - all fo the sake of Adam's and our family's wellbeing and happiness.

It was also then, that my husband and I decided that there should be no room for sadness. Worries, yes....but not sadness.

Like Dr Radji said, receiving Adam into our lives was a happy occassion and que sera sera.

Knowledge and prayers would guide us from that point onwards.

Thank God for Little Miracles!

When Adam was born, his eyes were literally out of its sockets.

Well, not really (smile).

They were in their sockets, though not within their eyelids. We were told (well, only my husband really, as I was still busy on the birthing bed) that Adam had shalow eye orbits (refer General Symptoms of Crouzon Syndrome) which resulted on his eyes the way they were. They needed to operate on him immediately in order to repair any damages that may be. Eyes lids (fashioned from skins taken from other parts of his body, perhaps) may also have to sewn in, for instance.

For an adult, it sounded like a scary situation to be in. For a baby, it was even worse. General Anesthesia (GA) was also not a good thing for young children, let alone newborns.

But we did what we must, and so we placed little Adam in the trusted hands of the capable doctors of the Damansara Specialist Hospital. So, approximately 3 hours after his birth, Adam had his first ever visit to an Operating Theatre (OT).

Two ophthalmologists worked on him simulatneously in order to limit his time under GA.

The findings were - he had a perfect pair of eyes with all optic nerves intact and pupils responding accordingly. Miraculously, he also had 2 perfect sets of eyelids tucked behind those big pair of eyes of his (hence, there were no need for any cutting and pasting). His eyelids were sewn together, though, at all 4 corners in order to keep the eyes in and protected.

As a result, he looked just like any other ordinary baby - just with massive eyes bags.

But we did know that the eye condition was just side effects of something greater, and with that, we braced ourselves for the worse.....

About Turn!

On March 5, 2010, we welcomed the latest addition to our little family - a baby boy we named Muhammad Adam Faiq. Today marks our little bundle of joy's 2 month birthday and I feel that today is the best day as any for his Mommy to start of her recount of their their current and future family adventures centering on little Adam himself.

You see, our Adam is one in 25,000 or, in some census, one of 16 in every million people in the world. In short, our little Adam is special. At birth, the doctors diagnosed him to have a rare medical ailment termed as the Crouzon Syndrome.

'Crouzon who?', you might ask. His father and my reactions too at the time.

Jenny67's homemade video on 'What Is Crouzon Syndrome' very effectively explains what the ailment is all about.

What I hope to achieve with this blog is not for it to serve as a medical journal but rather to share experiences from a layman's point of view so that many who are in the dark about this ailment can be more informed and those who are already going through such similar experiences, know that they are not alone in this.

Please also be forewarned that my family and I are of the Muslim faith and from Asian origins. While I will not, consciously, belittle any other beliefs of the world, I may make references to our experiences in religious context, though quite sparringly, I promise (smile).

So, for those who would like to share our journey, hop on and hang tight! It may be a bumpy ride. Let's pray for a safe journey and happy destination.